wings and things

Dress rehearsal

It’s now been a bit over a month since I thought Anthony was on the brink of death. In the space of a couple of days, he had suddenly become unable to chew and swallow food in the ordinary way, and, on two occasions, had been unconscious for several hours.

The fact that these two ‘end-stage’ things happened in a matter of days convinced me that Ants was definitely on the way out – soon. I was catapulted into action, messaging family members, making appointments with funeral directors, our lawyer, meeting with my best friend, the Anglican priest who blessed Anthony with the last rites, picking songs for the funeral, and asking nearly 20 people to be pallbearers ….

And then, as my new friend Moira described it, Anthony “did a Lazarus”. Okay, so that is all very well and I am glad, but the panicked anxiety and anticipatory grief I felt during that week has left a bitter taste in my brain. I feel as if I have been tricked, deceived; here I am all ready for Anthony’s death but the joke is on me because he is still beautifully alive, holding my hand and watching a movie with my mother and me… today.

Ming, our son, our one child, always gives good, sensible, pragmatic advice to me. He is an absolute rock of a person and has had to cope with Anthony not recognising him several times recently. Ming is philosophical about this because he already knows how dementia works.

No dress rehearsal prepares anybody for the death of a loved one.




IMG_4655Thinking versus thunking (I like thunking!)

3.10am: There is something quite exciting about hopping out of bed at 3am, wide awake, dashing to my writing room and switching on the computer and, aha, engaging with various friends. It seems somehow illicit to be up and about, drinking coffee while the sky is still black night, listening to absolute silence, reading thousands of words, smiling at photos on my screen ….

4.03am: Me chuckling that it is now just after 4am and nobody is going to tell me to go to bed.

4.38am: Ming’s favourite phrase is “Do what you want to do!” This type of 21-year-old wisdom sustains and motivates me whenever I am stuck. I feel grateful for this wonderful son of ours who, having recovered from two spinal surgeries, his father’s transition from home to nursing home, the car accident that injured so many and was his fault ….

For all of the above reasons I prefer to thunk rather than think because too much thinking can do your head in whereas thunking allows you to step aside. It might be just a tiny step (an ‘i’ to a ‘u’) but it makes a hell of a difference!



Overcoming the terror of getting a massage.

Tomorrow I am seeing a person who I have known about for some time. She is a qualified personal trainer and masseur and she is the daughter of my friends who own our local butcher’s shop. I don’t quite know why I am so terrified but it is probably due to the fact that I don’t particularly like taking my clothes off and I am really hoping not to have to do that ….

Today I finally got the courage to go to Karissa’s place for a massage and it was fantastic to meet this wonderful young woman, and to have everything explained so clearly before and during the massage. Karissa has this way of making even a somewhat tactile-defensive person like me be okay with taking most of my clothes off, drape myself with towels and lie face down on the massage bench. Karissa left the room while I prepared myself and then she knocked on the door before re-entering the room. I was nervous and feeling naked but then all of that nervous nakedness succumbed to her respectful covering of my lower body with towels and then the massage itself. I wasn’t quite sure what to expect from the massage (having only had a couple of these in my life) so I was a bit shocked when Karissa found these painfully ticklish points in my back, neck and shoulders. After the session, I had to go to work at the nursing home and I felt quite giddy with both the effects of the massage AND the discovery of this amazing practitioner.

Thank you, Karissa, for eradicating the terror!


Catching up

After weeks of fighting a tenacious flu that kept coming back after each course of antibiotics, I finally got a chest x-ray which was clear (phew!) but my dr seems to think it was probably a case of pneumonia treated with the wrong antibiotics (I saw another dr to begin with because mine wasn’t on duty). So now I am on a fifth course of two different antibiotics and already feeling a lot better instead of a little bit better. It is such a relief because, despite being well enough for my mama’s 80th b’day and well enough to visit Ants most days and to do some volunteer work, it is only now that I am beginning to feel normal well ha!

As my role as ‘care-giver’ has become most of my identity now, I have a bit of a terror problem when I get sick because I am so needed by Anthony so to have been given the gift of a clear chest x-ray is like gold!

I’ve been trying to catch up and re-connect with blogger friends but have now decided to simply read blogs in a from-now-on mode rather than go back to see what I might’ve missed. It’s been a bit of a relief, too, to let go of the self-imposed feeling of obligation to blog every day if I just don’t have the time or inclination. Perhaps someone should write a book about blog psychology because I get the impression that other bloggers often suffer the same kind of ridiculous guilt. Interesting.

My volunteering at the nursing home, though interrupted by this flu, because you are not supposed to go in there if you are sick (paradoxically, this is probably where I first got infected), continues to delight me and I have now sent an ‘expression of interest’ email in response to last week’s advertisement for a “lifestyle assistant” in the dementia wing. This is a permanent part-time position from 3-6pm for someone to provide activities while the nursing staff conduct the evening showers. As I have already been volunteering in this wing from 3-4pm on the weekends, I am familiar with each of the ten residents and have developed a bit of a rapport. Tomorrow I will fill out the application form and hope for the best. I think this kind of arrangement would be a perfect match and hopefully there will be no perceived conflict of interest as Anthony is not in the dementia wing. I am quite excited about this job possibility and the money would be a relief!

Ming has a job he loves at a restaurant called ‘Corners on King’ so he is gradually becoming independent financially and in other ways. He hates for me to make him any food so my tactic has been to make him a smoothie every morning into which I pack a punch of secret ingredients (if you want to know the secret ingredients you will have to email me!) For those who don’t know, Ming has, from birth, had a rather extraordinary unhungryness – long story which I can’t be bothered telling now but my best illustration of this is the 40C degree day, when he was about one, in which Ants and I had to use a syringe to push a bit of milk into his ungreedy little mouth.

The last few years have been enormously challenging with me having to resign from my job as university lecturer; Anthony’s permanent admission to the nursing home; my mother’s horrifying injuries after falling from her bicycle; the car accident and court case and cousins’ heroic recoveries; Ming’s two scoliosis operations; some friendships rekindled and others on hold; peace, joy, guilt and wretchedness in equal amounts; Ming’s short-lived, but loved, dairy worker job abandoned due to his spine; finding out that you really love eggs on toast; and that if you don’t like what you look like, you need to stop looking at yourself and look away…..


…. and finding out that the width of hope is immeasurable!

Catchya later….


Oh how much I miss the dancing days!

I was going to write something both poignant and eloquent but have hit a blank tonight. Nostalgia I guess. I tried to show Ants how to use his new phone to no avail this afternoon. Then, just a moment ago, he actually answered it!

Anthony, Julie and her mother, Meg, on wedding day 1993

A Goyders Dardanup

The treasure chest of memories of my dancing days with Anthony (and Ming too) is a constant source of absolute joy in the face of what we are going through now. This afternoon Ants was more frail and confused than I have ever seen seen him and I got a bit of a shock.

So, yeah, I miss the dancing days.


Blog blessings

I began blogging in November 2011, with no clear intention other than to write something every day, which I have for the most part. The subject matter meandered from birds to Anthony’s Parkinson’s disease, to Ming’s teenage-hood and scoliosis, to our personal struggles. I dabbled in novel and romance writing, briefly promoted my book about Alzheimer’s disease, attempted some poetry, began to write about Anthony’s and my love story, posted pictures, and generally wrote a whole lot of this-and-that.

In view of the miscellaneousness of my posts, I suppose “Wings and Things” isn’t a bad sort of blog title so I’m sticking with that because it allows me to meander in the usual way. This is obviously not good for the stats as themed blogs get more ‘hits’ but, despite wanting to make more people aware dementia sufferers should be treated with more respect, I don’t care any more about the stats.

One of the things that has astounded me about my blog journey so far has been the incredible friendships wrought (with people I may never meet in person), and the mutual support system enabled via WordPress. The blogs I subscribe to are an eclectic mix of bird, photography, illness, writing, grief, dementia and philosophical blogs (to name a few) and it is often very difficult to keep up. The good thing is that most bloggers understand this difficulty and don’t mind if you don’t read their every word/post – phew!

I would never go to a support group, I already have enough friends in my non-blog life, and I am not naturally gregarious, so I am rather astounded at how much I have come to depend on the bloggers with whom I have become close – an extraordinary community made up of some of the kindest people I have ever come across. I also enjoy offering my own friendship and support to these fellow bloggers and this has become a meaningful part of my life.

This blog has also connected me better to my already-there friends and family, sometimes disconcertingly. For example, I said to my friend the other day, “Guess what happened yesterday?” and she said, “I already know, Jules – I read your blog.”


So, in the spirit of miscellaneous gratitude, here is Diamond, our shyest goose….


…. saying thank you with me!


Tomorrow is always waiting for you.

Today was pretty awful and was made worse by a mother/son argument that escalated into recriminations, guilt, and ‘walk away’ tactics. To some extent, this worked but Ming and I were still so miserable – he in his shed and me in the house. So we began texting each other and have now established that I am the boss and he is the slave and he has even called me ‘Commander’; this is a good move.

Oh the joy of tomorrow! Of course tomorrow brings a fair few uncertainties but it mostly brings the excitement of anticipation, adventure and something new and fresh … and a new Ming, a new me and, maybe, a new Anthony!

Tomorrow is a gift.


A conversation with dementia

I realize that the title of this post sounds odd but sometimes, in my conversations with Anthony, it is as if I am talking to two people: 1. Anthony-familiar (Ants); and 2. Anthony-with-dementia (AD). Here is a rendition of today’s conversation in the nursing home.

Ants: When did you get here?
Me: Right this minute.
Ants: Where did you come from?
Me: Home.

AD: Ming and I got all of those calves rounded up and into the paddock in front of the house. They are all in good condition.
Me: Oh! When did you do this?
AD: Yesterday, after you left. We also fixed the fence.
Me: That’s fantastic – thank you.
AD: You don’t need to thank me – it’s my job.
Me: Yes, but it’s a relief to know all of the calves are okay and the fence is finally fixed. I was a bit worried.
AD: Ming is a good worker.
Me: Well you and Ming are a great team. It’s wonderful that you are teaching him how to do these things because I wouldn’t have a clue.
AD: We just need to fix up the other boundary fence now [trying to get up out of his chair]
Me: Well Ming isn’t here now so can we wait until tomorrow when you come home?
AD: Okay.

Ants: Bloody rotten about Ming’s back.
Me: Well your back isn’t the best but look how well you coped.
Ants: I think his is worse. He could have done anything if he didn’t have that back.
Me: We just have to accept it now, Ants – Ming has.

AD: I’m still going to need his help though, on the farm.
Me: Of course!
Ants: Tomorrow?
Me: Yes.

Tomorrow is Sunday so I will be picking Ants up around 10.30am to come home for the day, and Ming will take him back to the nursing home in the afternoon. Ants has requested smoked salmon and avocado sandwiches so that is easily done.

I would be lying if I said I am looking forward to tomorrow because, no matter how much I want Ants home, and no matter how much he will love being home, it is going to be an extremely difficult day for Ming and me. There will be a lot of lifting, toiletting, confusion, frustration, barely restrained angst (Ming), and barely restrained sorrow (me). By 3pm Anthony will begin to falter and by 4pm he will be unable to walk at all so I will have to get Ming to take him back to the nursing home at 3pm and Anthony will get upset.

On the other hand, perhaps I should just alter my thinking a bit. We will have four hours together, the sandwiches will be delicious and we will give Anthony a million hugs. In fact, I reckon the whole hug thing is underrated because, during today’s conversation, I decided to give Ants a hug every time it got a bit too confusing for me and his big/small arms around me were much more powerful than any words.

I will just have to tell Ming to go easy on his habit of hugging Anthony rather ferociously because it scares the hell out of Ants!


Ten degrees of joy

Ming and I saw his surgeon on Friday and the X-ray shows that Ming’s spine is now almost back to the way it was after his first surgery. I won’t bother putting the stats here – just to say that he is now ten degrees straighter than he was after he fractured two titanium rods. But the best thing is the residual pain/ache (since fractures) has gone.

The surgeon said that Ming, despite feeling better now, needs to take another six months for the inside healing to happen. He said that the bone stuff they used was very expensive and had enzymes that needed to do their work. I am glad he told us this because Ming and I were beginning to leap around with joy a bit too much (well I was!)

One of the hardest things for Ming is that he can never, ever, lift anything too heavy, or twist and turn like most of us (yesterday, when I turned around to look at something, he said, ‘I wish I could do that.’) I pretended to play a violin of sorrow until we both cracked up laughing.

Bravo Ming!


My uninhibited son!

Two and a half weeks ago, on the day of Ming’s second scoliosis operation, my oldest friend, Tony, came to visit us in the hospital. Ming was in one of those gowns they put you in before surgery and he was waiting in a very small room with several other gowned people. He had been told to remove his underwear but, as the gowns are so see-through, he hadn’t done so yet and his bright orange jocks were quite visible.

Well, just before Tony arrived, Ming, thinking he might be called at any moment, went to the bathroom and removed the jocks and handed them to me all scrunched up to put in my handbag. “It feels really weird, Mum!” he said to me/to the whole room (even when he speaks quietly his voice booms!) He had been given a premed. of some sort which had disinhibited his already uninhibited personality.

A few minutes later, Tony texted me to say he was in the hospital cafe so I went downstairs and brought him back to the little waiting room to see Ming. As soon as he saw Tony, he stood up and shook hands, then said, “My genitalia are exposed.”

Tony’s jaw dropped slightly but he is used to Ming’s idiosyncratic statements so he just said something like, “Thank you for that information,” and I cracked up laughing when I saw the other people in the room smiling at this odd exchange.

Yesterday, Ming and I had lunch with Tony in the town where we always meet, halfway between where we live and Perth, where Tony lives. It was wonderful – Tony can make me laugh like nobody else, and I love watching the way he and Ming banter. It actually struck me, at one point, that Tony is like a second father to Ming, especially when Ming jokingly said “Thanks, Dad” when Tony paid for our lunch!

Thanks, Tony – your friendship is a gift.

This is us yesterday.